Friday, July 31, 2009

Italian Soccer Fans Love Vittoria




"VITTORIA DON'T GIVE UP!!" -This banner was done by the friends of Vittoria's Uncle Andrea at the Roma vs. Gent in the Europa League match. Thank you all for your support. It is amazing the global influence this little princess has. 35,000 fans were in the stadium and who knows how many people saw it on TV. We are overwhelmed by the love of people we haven't even met. God bless you!

The Cousin's Lemonade Stand

(Aunt Jana writing)

Two days ago Nati was wanted to play with one of her friends and have a lemonade stand. I was busy at the moment taking care of some business calls and put her off for a moment. Then she came back in and said I have a great idea. Can we do a lemonade stand for Vittoria and can I call Taylor and Rylie and see if they want to help? So by 3:30 they were set up and selling lemonade and rice crispy treats at the end of our driveway. It the mean time Tori and I (mostly Tori) made a poster to help the girls advertise. Yesterday, they set up their lemonade stand at the end of Taylor and Rylie's driveway and were selling lemonade and cookies. Both days they had friends show up wanting to help. They have been so excited about their little business they put together to help Vittoria. They have been talking about other locations that they might be able to set up and raise more money. They have been listening to us adults talk about fundraisers and decided to come up with their own, how clever. They are amazing kids!!



Friday Morning Up-Date Week 2

I can't believe it's Friday again. What a ride. We are so grateful to all of you who are praying and pulling for our little Vittoria. She is being so strong. We are doing our best to keep it together. Yesterday turned out to be a tough day on us and a little scary for her last night. Thank heavens we have family and friends to help get us through. We couldn't do it without you!

Today will be another surgery to implant the centrifugal VADs (Ventricular Assist Devices). This is a measure to buy her time to wait on the transplant list. It is amazing what they can do for people. It may be a long day.

I have to tell you about Vittoria's Cousins. They decided to set up lemonade stands to raise money for Vittoria's heart. I can't wait to see the pictures. Sounds like they really did a great job. We will post more later. Vittoria adores her cousins. They are all pretty good friends and love each each other so much.

We have to run so keep the faith and keep praying for our little princess. God is with her!

Thursday, July 30, 2009

UPDATE THurs

READ THE POST BELOW THIS FIRST ---Okay. All is well. They were able to stabilize it. Which leads us to the latest. After our appeals hearing today with the insurance, we were able to talk them into treating this hospital like the fantastic hospital it is and not penalize us because we don't live in LA, Denver, or Seattle. They pretty much wanted us to pick up and move to one of these cities. Like that could ever happen. It took 2 hrs to move her with the help of 8-10 people just to get a CT scan. 9 I.V. pumps, respirator, ECMO machine. You just don't pick up and cruise to the airport and hop on a plane. Then what do you do? Just go move the family to another state? Rent a place and hang out? then know you will have to live there for 6 months to a year for post transplant treatment? Come on!!! Then we had to fight to get approval of a device that is almost approved by the FDA and is the latest and best technology and would be best for her. No approval from FDA so no approval from insurance. Had to endure the stress of the appeals hearing process. We have to fight to give her the best care like her life depends on it..... oh yeah! IT DOES!! It's bad enough to go through the emotions and stress of the situation but have to worry about this part of it too... I am not a very plesant person right now. I'm on the fight!

So as of right now. Tomorrow around mid day she will go in to get a couple pumps installed to work as her heart until transplant. This will get her off the ECMO which is the fragil part of everthing right now. The smallest little thing can upset the whole day. The centifugal pump isn't without risk but it is better than where we are at. We didn't sign up for this deal. We just wonder how we got here. One minute our baby girl is skipping down the hall holding the anethisiologist's hand smiling looking up at him and 9 days later we are here.... How did this happen?

It has been a long day. We are exhausted. We cry. We pray. It really is in God's hands at this point. May the surgeons be blessed and inspired. May Vittoria be strong. Please continue to pray for our little princess.

2nd Thursday Night

The roller-coaster continues. Right now as we speak the tube carrying blood back into her aorta became kinked. A quick thinking tech opened the dressing and was able to twist the cannula to restore flow. We went back to say goodnight and and he was holding the tube until the surgeon on call could get there. They were setting up to operate as we left. Not the sight you want to see. If they come to get us before I finish I will just post and pick up later.

Uncle Andrea's friends made a huge banner to hold up at the soccer game in Rome this evening. About 35,000 soccer fans plus the ones watching on TV read the words "VITTORIA NON MOLLARE" which means "Vittoria Don't Give Up". This little girl has an influence on a global level. Tomorrow we will post pictures.

2nd Thursday Morning Up-Date

It has been a week and Vittoria is hanging in there. Hopefully we will have more to go on here in the coming hours. We had a quiet night and we even got some rest... that is until there was a Code Blue (somebody crashed). That was a bit before 6am.

Vittoria is being tough. This morning she was sleeping and they were messing with her foot and she kicked at them and started to cry. I talked to her for a minute and she settled down and went back to sleep. She i being feisty and is probably tired of them messing with her. We are going to make a schedule for her with story time when we can read to her rest time and other stuff to get her into a routine. Lots to do!

As for blood donations. We found out that we were mis-informed about being able to donate in her name. That program is no longer in place. We encourage all who can to donate blood on a regular basis. This time of year the banks are a little low and every bit helps. We have used a bunch of it, literally gallons of it. It is something you can do to help.

Gotta run! Keep the faith and prayers up for our little angel. God is listening!

Wednesday, July 29, 2009

Wednesday Night

Vittoria had a very quiet day. It was a rest day compared to others. We had time to go in and talk to her and tell her stories. She is a brave little soul. She has been moving around a bit and responding to questions and following directions for the nurses. I had a chance to talk to her. She just looked into my eyes with such longing to be held. She cried a little. She must be so scared. I feel bad for her because it is not like she can sleep. Every ten minutes there is a bell that rings or a test to be done. Thank heavens for the drugs I guess.

Today was a marathon for me trying to work on insurance and financial stuff. Lots of programs out there. Now which ones can just an average little family qualify for? That is to be determined. Well it has been a long day and we have a ton of reading before we meet with doctors tomorrow. Have a good night! Keep our angel in your prayers!

Wednesday Morning

We had a stable night. She is tough. The physical therapists went in to put some splints on her feet so she won't get the pointy toe and she kicked at them. She was totally responsive and following their directions. The one PT had the same birthday as her and said that they can have a party together next month and she nodded her head yes. She is a fighter. The other heart pump devices should be here this afternoon. We will have to see when they schedule the transition. No time to write much now. More later. Keep the faith! Keep praying! She'll keep fighting!

Tuesday, July 28, 2009

Going to Surgery last fall - Mom

Going to a back surgery last fall.
No fear.
Courage.
Happiness.
Determination.
This was her going to her 14th surgery.
No apprehension here.
Let's just get it over with.
Win.
Fight.
Overcome......
La VITTORIA!!!!!






Going to Surgery last fall - Dad



Tuesday Night

It has been a full week today since she went in for surgery. We are hanging in there. We want to thank our family and friends for the constant vigil that they have been enduring with us. Val's brother got here tonight from Italy. He came straight here and shared such a precious moment as he spoke to her just like he always does with so much love and adoration. I don't know how we could ever get through this without you all. We love you!

This evening we had some troubling news. The CT Scan shows that Vittoria has suffered some brain trauma somewhere along the way. Most likely it happened when she crashed in surgery. So far we can tell that she has some trouble with her left hand but not like it is totally gone. We will have more consults tomorrow after the neurologist has a chance to see the results. We will have to see what the prognosis is. As of tonight this would not disqualify her for a transplant because she is doing so well otherwise. Tomorrow will be a new day and my inner peace leads me to believe that we are on the right course.

My little angel is a fighter. Through all of her challenges in the past, she has never let it get her down. One day, she looked troubled and finally let me in on what was bothering her. She said, "Dad...... I can't run as fast as all my friends." I told her that it was okay and she said without skipping a beat, "So, do you want to see how fast I can run?" She then took off running as fast as those skinny little legs would carry her around the back yard. THAT is the fighting spirit we know. She never lets things get her down. She lives life to its fullest. She is always so happy and positive and leaves an impression on everyone she meets. She is so determined and such a fighter. She is fighting right now. We had a lot of awake moments with her today. She looked me right in eye as I talked to her. Her spirit is still there and being strong. She let us know she was scared. She cried a little and shed some tears, but she quit when we told her that we were with her and that she could do it. She is determined to overcome and we are determined to give her every chance to do it. Vittoria means "VICTORY" in Italian. She knows what her name stands for and she lives up to it. Pray for her .... please pray for her ... now more than ever!!! goodnight!

Tuesday Morning

We have met with the transplant team members again today. They look at everything about her and us. They are doing all kinds of tests looking at all of her functions. We will know this afternoon if she will be put on the list or not. It has been quite the process. It will be quite a future. The post transplant life is just a magnification of what we have been living since she was born. Lots of doctor visits and a steady regime of medicines. The first year will be intense but gradually returning to normal.

Vittoria was pretty awake today and we were able to go in an sit with her. She indicated that she was scared and shed a tear but was comforted by our encouragement. Thank heavens for the Versed that will make her forget... (can we get some too???) the pain and what she is going through. She tried to pull out one of her tubes.... now that is the girl we know. She held my hand with her right hand and her mom's with her left hand. She is such a fighter! We love her so much!

We will see where things go today. So many external things to consider. Lots of forms and applications. So much to be done.

Monday, July 27, 2009

Monday Night

What a day! Talk about information overload! We covered so much information in such a short period of time. I don't know how the professionals keep it all straight let alone us. We are supposed to read it all and be ready to sign a bunch of papers tomorrow. This is more homework than I ever had at school. Maybe they will give us an honorary nursing degree.

This afternoon, they did a neurological exam on Vittoria. It was heartbreaking in the fact that they had to bring her off her meds to wake up enough to see if she had function and control. She cried and tried to talk to us but couldn't because of the tube. She was so brave and worked so hard to do what they asked even though she was feeling the pain. We hated to see her like that, but happy to see she was able to do it. It was so comforting for us to be able to talk to her and know she is still there. She is such a fighter!

After the neurological exam, they had to turn her bed space into an operating room so they could open her up wash her chest out again. They had to redo a drain tube that had become blocked. We had to stay away for a few hours while they did it. That was hard to do after being there talking to her just before. Now she is heavily sedated again.

Tomorrow we learn all about heart pumps, and more about the transplant process. I'm a little worried about the costs. I guess that is what we will discuss in our 10am meeting. I know this stuff is a extremely pricey but you know, there is no price too high for the life of a child. I can honestly say that I will willingly give up everything we have worked so hard for to give my little princess a fighting chance.

Now it is all about the qualification process and pray that she qualifies. A lot of doors close if she isn't a candidate. I now feel at peace with the road we are taking. I know we are moving in the right direction and we will see where it takes us. Please keep praying for my little princess.... Goodnight...


(Mom's turn)

I have been reading the comments on the different posts, and it humbles me to know that so many people are praying for my little girl, friends, family, total strangers..... I honestly don't know how I can ever repay all the gestures of kindness, the comforting words, the hugs and prayers...I probably don't make much sense..it's 11pm, we are exhausted, I have not stopped crying since last Tuesday and at times I feel numb...like I'm not really living this, like I'm going to wake up and go to my girl's room and get her ready for the day. People talk to me and sometimes I stare at them not really knowing or understanding. I feel like I'm underwater. I miss being awakened in the middle of the night by this dark shadow on my side of the bed that tells me she has had a bad dream, or the cuddling on the couch with the four of us, or the trying to get her hair fixed for school and we always end up doing a ponytail because it's the only hairdo that I know how to do. Every single time I go to see her now, I just want to grab her and hold her tight, my heart literally breaks when I see a little tear forming in her eyes...I think I felt my heart shattered last Tuesday and it has not been the same. I have been praying for a miracle because she more than anybody deserves one. She is fighting hard and so are we. I guess now I know why I don't write posts... my eyes are full of tears again for the love of my baby girl...

Monday Morning

Our little angel is still fighting. We have had an uneventful night... just how we like it. The nurses are working so hard. Nurse Torrey had blisters on her hands from stripping Vittoria's drain tubes. It is amazing the hard work and diligence these awesome professionals have. Thank you!! We want to also thank our families and friends that have been so close. There is something so powerful about a nice firm hug. I can't wait to be able to give one to my little princess.

So many of you are following this blog. I was never big on blogs but it has been such a great way to let you all know what is happening, but a way for us to collect our thoughts and .... sorry gotta go!

Okay, here is the latest. She is being evaluated for a heart transplant. This is way unfamiliar territory. But it does bring hope! We never know where life takes us or what Gods plan may be but we will keep fighting. I have mixed feelings about transplants. Our joy would be another's nightmare. We have been living a nightmare and I wouldn't wish it on my worst enemy. I then think back to my dear cousin Meridith who passed away after an auto accident. Many beautiful things happened as a result. The family was even in touch with her heart's recipient. It was a positive experience. This afternoon we will get more information. We will see what the options are. In the mean time it would mean a change to another type of pump that would eventually lead to her breathing on her own and even to walk around.... carrying her battery of course. We will know later. I will keep you posted. Keep the faith and keep on praying!

Sunday, July 26, 2009

Sunday Evening

What a day. The emotional roller-coaster is exhausting. I guess I am one of those that hangs on to my guns and my religion, because without my religion, I don't know how I could possibly get through this.

Around mid-day we were at an all time low. As far as we knew, there was not much hope out there. You know that we aren't the kind of people that go down without a fight, and Vittoria is as stubborn as they come. Vittoria's Cardiologist finally got back to town and came here to get updated on things. She breathed a ray of hope into our life again. We are going to give that little angel more of a chance. We may have other options. Our family prayed together and we administered to Vittoria. We felt much more at peace with the future. We will not give up without a fight. She will not give up without a fight. We will know more in the morning. All the medical minds will meet and discuss things and then we will have more to go on.

For tonight, we will try to get some rest. We will work like it all depends on us, and pray like it all depends on the Lord. Thank you all for your love and support. Words cannot explain our gratitude to everyone who has written us, called us, visited us and the many who are praying for us. We love and appreciate all of you! Please continue to pray for our little princess. Also please pray for us as parents over the next few days that we can be inspired to do the right thing, make the right decisions, and understand our options. May God continue to bless us and may he bless your lives as you pray for ours. Goodnight....

Sunday Mid-Day

The surgeon just came by to tell us that it didn't go well coming off the machine. They will repeat it again tomorrow, and if it isn't improved over today that there isn't much hope. We really need that miracle. Please continue to pray. Please......

SUNDAY MORNING

Wow! Change of plans.... They decided to move things up a day on taking her off the machines. They are doing it as I write. We will see how her little heart responds. She will either take off and go or we may have to go back in to clean her out, repair any bleeding and re-establish the drainage tubes that have become blocked, then put her back on the machine again. They will also do the Echo that was planned for today. Sorry it's a short post but I need to go. Thank you all again and please keep praying that this will be the beginning of the recovery.

Saturday, July 25, 2009

The Nurses Here Rock!!

Thank you Nurse Torrey for washing my hair and the beautiful princess braids!! I love them!

Saturday Night

We appreciate the ongoing love and support from so many of you. We love the comments on the blog. It helps to know we are not going through this alone. Thank you to all who have stopped by to visit with us and give support to our courageous angel. It has been such a stress relief to have family and friends here to chat with, cry with and even laugh with. (all of which within a 20 second period sometimes)

Vittoria had a somewhat stable day. She started to bleed a lot again in the early afternoon. They decided to try a medicine to let the blood clot a little. The problem is that we don't want clots because of the ECMO machine. They could break off and go back into her body. Weighing the risks, that is better than going back in and traumatizing the heart again. It's been through enough already and it is the part we are trying to heal. The bleeding slowed down for a while. It picked back up a bit this evening. We will keep our fingers crossed and pray that it works until Monday.

Jim, Donata, Michael, and mom put together a music compilation with Vittoria's favorite songs. Then we had to call in our favorite technology wizard, Spencer, who stopped by to help transfer it to a CD. (So some of us are a little challenged that way.... what can I say??) Mom took it in to Vittoria as a little surprise. It started out with Toby Keith's "Courtesy of the Red, White and Blue" and she popped her eyes open when it talked about the boot in their... well, she usually tries to edit that part when she sings it. The next song was Taylor Swift's "Love Story" which is Vittoria's favorite song and she opened her eyes and looked around for a little while. I guess music heals. Again tonight when our Bishop and I went in to see her, we started the music and when we played "Love Story" she opened her eyes again and looked around. It is so encouraging to see these little things that bring so much hope and joy.

Again we are so humbled by the tremendous outpouring of love and faith for our little angel. We are so grateful for Sunday to be here and that so many people, congregations of many faiths, will be praying for our little girl. We especially want to thank our ward and the many other wards fasting and praying for our Vittoria. We love and appreciate you all.

Saturday morning update

(Mom's turn to write) I really don't like to write too much, heaven knows my sisters-in-law have been trying to convince me, but there is a first time for everything. I'm really doing it for my girl, and writing during this time, opens up the flood gates. Anyway, we were able to grab a few hours of sleep before going to see our little girl at 6 this morning. She had a stable night and she looks even more beautiful with her new hairdo: her nurse Torrey washed her hair and did french braids after they took off her EEG (electroencephalogram) and her hair was covered in glue. I know Vittoria would love her hair. She would say that she looks like Barbie in one of her princess movies, and I swear I will learn how so that she can look like a princess all the time ( and my sisters-in-law can take a break). I went back with James' mom and as soon as I started talking to her, her eyes opened and closed a couple of times, like she recognized my voice. She has never done that for me. Her dad and nurses have been able to get her to communicate, but this time it was just me!! Of course, all the practice I have been doing to not cry or fall apart went right out of the window. I don't know if I can explain exactly what happened to my heart, but it was like it was jolted by a positive shock.

My mom and dad just got here with our little Jacomo so I am going to go be a mommy to my little boy for a while. Thank you all for your thoughts and prayers and please keep it up. Our little princess still needs it!

Friday, July 24, 2009

Friday Evening Update

We want to express our deepest, sincerest gratitude to all of you who are expressing your love, support and prayers for Vittoria and us. Words are not adequate to describe our appreciation for all of the kind tender gestures and especially the ones that normally would seem so insignificant but now carry such a powerful sense of meaning. So many of you have reached out and we thank you. Our dear friend Amy, who has lived through this type of nightmare, summed it up best when she told me that you would never even wish this experience on the devil himself. I can't agree more. At this point, as trite as it might sound, it is in God's hands and we will do our best and fight as hard as she will fight. Faith moves mountains so we will keep going.

Vittoria has had a pretty good day since I wrote last. She is starting to bleed a little more. As long as they can get it in faster than it leaks out they can manage it. The challenge with all of the machines is keeping her blood thin enough to not clot in the machine but not so thin that she can't keep it in. Last night she used 16 units. That is a lot. We are finding out more, but we need people to donate blood to ARUP in her name. They credit it toward her account. So many of you have asked "what can we do?" This is something that can be done for her. We will get the word out when we know more.

We have taken such solace in the fact that so many people all over the world and so many denominations are praying for our baby. We have had entire congregations in churches worship and pray for Vittoria. We know of an 8 year old girl who fasted an prayed for her. Her name has been placed in temples around the world. Candles have been lit all over and especially in Italy for our special sweetheart. An entire Baptist congregation prayed for her. I KNOW God is hearing every one of them and He knows her and his hand is at work. She is already a miracle and we are asking for one more. Keep praying! We love and appreciate you all. Thank you, thank you, thank you!! Let us continue to unite our faith and prayers! We love you all!!

Friday Morning Up-Date

What a roller coaster. Vittoria had to be operated on again to stop bleeding. She was losing 500 ML and hour and now they have it down to 80 ML and hour. While they were there they got to see that some function is returning to the lower part of the heart. That is encouraging. Once again, our little girl showed all of us how tough and what a fighter she is. Mom and dad are tired and emotionally drained but hanging in there. We will have more testing probably Sunday but Monday is planned to be the day we get a lot of answers. We need function to return to the rest of that little heart. Keep her in your prayers. Thank you all for the love and support.

Thursday, July 23, 2009

Evening update

It has been a nice quiet day. We expect the next few days to be the same......

Well so much for that thought. I was interrupted in my writing to take another ride on the emotional roller-coaster. Vittoria had developed a clot forming in the ECMO tube. It was in the tube going back into her body so it was of some concern... they had to lower her body temperature, sterilize the room, stop the blood flow while they cut out that part of the tube and replaced it. It is the "stop the blood flow" part that is concerning. Val is pretty fragile when these things come up. They let us know so we can spend some time with Vittoria before they do it... (I don't know if i mentioned that they did this same thing yesterday).... As we talk to our little princess they bring in all the stuff like extra blood, lots of meds and of course the "CRASH CART" gets rolled in just in case... It is a little nerve racking. We are so grateful that they have the best of the best people and technology taking care of our baby girl.

We are going to get a bit of sleep so I'll write more tomorrow.



Thursday Morning Up-Date

The roller-coaster has been a lot smoother. We only had one moment when we were informed that she had a clot formed in the bypass tube of the machine. They basically camp, cut and replace that section and they did it in less than a minute. The up-side is that while that happened Vittoria's heart was giving a bit of a pulse. That was such great news.

Around 1:30am I went in to say goodnight and it was right before the next dose of pain medicine. that is when she is the most coherent. I talked to her and she started answering my questions by shaking her head. (she is full of tubes and of course can't speak). She also kept trying to open her eyes and see through that goop they put in them to keep them moist. I asked her if she knew how much we loved her and she said yes. I asked her if she hurt and she said no. A tear formed and her chin started to tremble and I asked her if she was crying and she said yes. I asked her if she was scared and she said yes. I tried to encourage her and let her know it was okay. I told her that little brother went to play with Brittney and Luke and her eyes shot open as if she was going to hop up and go play also. About then the new dose hit and she was back to the deep sleep. Encouraged, we were able to get some sleep ourselves. We were able to get a sleep-room here to be close.

6:00am we went back to see her and it was a pretty uneventful night.... just the way we like it. We have been informed that we will continue this through the weekend with a string of tests along the way. Monday they will try to take her off the machine again and that will be the determining point of what the future will hold.

Thank you all for the prayers and keep it up. We need this little miracle and keep this angel among us!

Wednesday, July 22, 2009

Playin' in the Pool

video

Vittoria and her Dog

video



































Here's what has happened so far...

Thank you all so much for the outpouring of love and support. It has been a roller-coaster ride for the past day and a half. Our plan is to update this every so often because we have limited cell coverage here in the hospital and we have had little time to go outside and make calls and send texts. Also give us something to do while we anxiously wait around.

Vittoria was born with Marfan Syndrome. It is a connective tissue disorder tha causes a lot of problems for those affected with it. Here is a link to the National Marfan Foundation for those that would like to know a little more about it. www.marfan.org

Our little angel exhibits most of the symptoms of Marfan and has been through a lot in her young life. She has had heart surgery as a toddler and has had the VEPTR (rods in her back) for many years.

Yesterday's heart surgery was to be her 16th surgery and we are trying to decide if we count this as just the 16th or the 16th, 17th and 18th. Everything went well in the surgery until it was time to finish up. That is when things turned a little scary. She basically crashed and they had to go back in and change a few things. The 7 hour surgery turned into around 12.

Things were somewhat stable but started to slowly deteriorate through the night. She had a Heart Cath this morning and found that the a Coronary Artery was partially blocked and they put a stint in and got the flow going. Luckily the muscle was not dead. Once that was fixed a new leak surfaced. She then was opened up again to find that.

Now she is back in the ICU on an ECMO (Extracorporeal Membrane Oxygenation - like a heart/lung machine). We will let her rest and recover for a few days and let the machine do all of the work. The hope is that the heart will heal and recover. It is the only option left.

Please continue to pray for our little princess.

Vittoria

Hello Family and Friends. Vittoria is being a trooper and doing her best, but while she's giving it her all, we thought a blog might be the easiest way to let you all know how she is doing and any other updates the family might have. This way James isn't bombarded with texts and figuring out who knows what and all the other stuff that can be a bit much at this time. So, the goal is to have this - Vittoria's Corner - be the place to check out and see how things are going.
Just a side note, James and Val we love you and your sweet little family and are praying and praying for your beautiful, strong little girl.